Remember the old woman who lived in a shoe? I don't judge her nearly as harshly as I used to, now that I have a husband and six children. In our 100-year-old farmhouse, we have broth, bread, and lots of Smucker personalities, and this blog is about our lives.

Thursday, July 31, 2008

Wanderings

I always find people's flight stories boring. "We were headed for Kansas City but then there were tornadoes there so they re-routed us to Chicago" yada yada. Until they happen to me. Oh my. Then they're like juicy gossip and everyone ought to sit there with their mouths in a perfect O, listening and exclaiming.

I got to Chicago ok today knowing I'd have to wait 3 hours before going on to Charlotte, North Carolina. Ok fine. Bought expensive food, worked on computer. (Note: you all need to fly to Portland sometime and experience buying food in restaurants/fast food places for the same price that they charge in their non-airport facilities.)

O'Hare is a dirty, humid, busy airport. At one place there were these big tall white columns like airports have, but the top half of them was taken away for some reason, revealing that they were actually just white decorative tubes around a bunch of pipes and wires. . .and these pipes and wires looked rusty, crusty, caked with awful things, and downright dangerous, like they were going to crumble away any minute now.

Meanwhile in the restrooms they had these cool new inventions, the only redeeming factor at O'Hare--there was this tube of clear plastic around the U of the toilet seat. You wave your hand in front of the little green light, and ZZEEEEEEP! the germy tube gets sucked into one end of the U while pulling behind it a clean section. But trust me, don't go to O'Hare just to see this, because the toilet flushes on its own with great ferocity every thirty seconds as well, a frightening experience.

Oh yeah, my schedule and stuff. So there were thunderstorms around the Midwest and more and more flights were being delayed. And after two delays they said our flight to Charlotte was cancelled. What a sick feeling.

Everyone else scampered to the desks to change their tickets and I followed with a heavy heart, meanwhile calling Paul and Amy to pray for me. And of all the miraculous answers, the airline lady was able to send me on a flight to Greenville, and Greenville is way closer to Amy than Charlotte anyway, and Amy was already in Greenville with her friend Esther. And then it was a small plane, three seats wide, my favorite, so I was a happy traveller again.

So Amy the dear daughter picked me up (but not my suitcase because it got sent to Charlotte )and we talked with great speed all the way to Due West and Erskine College where the convention is, and I have completely fallen in love with this campus. It's like something out of Anne of Green Gables going to Queens. We're staying in the women's dorms, a 3 story white brick building with a large porch on the front with southern rocking chairs here and there, and inside are high ceilings and tall windows and elegant furniture and a parlor and a sitting room and two wide white open staircases turning upward, and you can just see Gilbert nervously waiting on one of the elegant settees while the matron watches with an eagle eye and Anne comes dreamily down the stairs in her new taffeta gown and he gives her a box with flowers and she pins them on and they walk across the Quad to the cotillion.

Yes, well. This is what's actually on my mind: I took Emily in for a blood draw a couple of weeks ago to be re-tested for food allergies like she was 6 years ago, and found out mere hours before I left that they couldn't do the test because her white blood cells were dying off way faster than white blood cells ought to die off.

Now does that sound ominous or what?

I managed to get hold of the doctor before I left, and he tried to keep me from freaking out, but said yes it's cause for concern and we need to look into it a lot further.

Best case: someone made a mistake with the blood draw. Worst case: some horrible form of leukemia or a blood disorder. In between: something to do with West Nile. Something fixable that will restore her to good health. Who knows, maybe she'll be the textbook case, helping the medical world discover the link between WNF and idiolymphocyticatrophy. (I made up that word).

So today I was on the plane and the woman next to me was a wise and Godly grandmother whose son is dying of cancer. So I told her about Emily because I knew she'd understand. And she re-affirmed that prayer is the key to all of us getting through this and was so nice and just what I needed that of course I started crying, which is what I do whenever someone truly empathizes.

Speaking of which, a number of very kind and well-meaning people have hinted/suggested/implied/insisted that Emily's health issues are due to emotional/spiritual issues. And if she would talk more about things/quit reading fairy tales/confess hidden sins/expose some unknown past abuse/get counselling/get treated for anxiety then she would get better.

I find this very difficult, for two reasons: 1) I am easily intimidated, and 2) all of my instincts as a mom tell me she has something specific wrong with her physically, and while I know she has plenty of character issues to work on, none of these conjectures resonate with my spirit as being true.

I am not saying she doesn't have emotional issues. But goodness, who of us doesn't at 17 or 18. And we don't go around analysing Emily's friends her age and getting them to probe as deep as they can to see if there isn't maybe something down there, do we? Even if they listen to bad music or flirt shamelessly or seem sad and withdrawn, somehow we let them grow up and deal with things on their own timetable, because they're healthy.

Ok, I'm annoyed and frustrated and tired, did you guess? And worried.

I also think we American Mennonites don't have a box for anything vague and chronic. Cancer we can handle, or a broken leg. But bring on slow fevers and fatigue and we start analysing and conjecturing and implying and blaming.

I would love to be vindicated by a specific diagnosis that would explain everything. But I would way rather just have her get well, vindication or no. And if I'm wrong and it's emotionally based, I'd happily be proved wrong if it made her well.

16 comments:

You know, illness is one of those hot-button topics. I remember awaiting the results of my bone-marrow biopsy (10 days!) and the incredible peace that God had given me/us. He didn't "say" that I was fine but I knew that whatever it was, He was going to walk us through it.

Fortunately for me, it wasn't Leukemia or anything else cancer-wise. Unfortunatly for me, what I have is an auto-immune disorder (Ideopathic Thrombocytopenia Purpura, a not made up word, although it sounds like it should be) and I have been told that I am the Poster Child at the Texas Cancer Center for the most resisant case they've ever dealt with. 4 years later, hundreds of thousands of dollars, having my spleen removed, given every kind of drug available even a chemo drug, I still deal with low blood platelets.

The hot button topic I mentioned? I get sick of people telling me that:

A) If you had more faith, God would have healed you by now.

B) God is punishing you becasue you obviously have unresolved sin in your life.

C)God isn't happy with you because you believe....

D) God is unhappy with you because you DON'T believe....

E) "God told me that you need to..."

F) God must think you're a really strong person or else He wouldn't have put this on you

I think you see a pattern here. Well meaning advice and everyone seemingly know how to fix your problem. If only it was that simple! One thing I have learned is that I have to be proactive and take the initiative when it comes to my health. I know my body better than the doctors and nurses do and sometimes you have to MAKE them listen!

Whether this is my "thorn in the flesh" keeping me focused and dependent on God or something that will be taken away from me, I do not know. I can only live in the present and hide in "the cleft of the rock". God is all I will ever need, I just need to make Him all I ever want!

I guess the bottom line on bad advice from others is that they really do mean well, don't they. Jesus was let down so many times by his own closest earthly friends, who "just didn't get it" and added to his suffering and loneliness, I'm sure. He promised us we would experience what he did on our sanctification journey, so I guess in that sense you can "rejoice" in the affliction of thoughtless, careless, clueless people and the things they say - they're helping you be more like Christ! (It beats punching them in the face.)

Your sister has wise advice. We deal with chronic illness in a teenage daughter too & the only thing to do is deal with it day by day knowing some days will be better than others & some days are just going to be shockers. Selfishly I'd rather have a well daughter than the one God is using to touch unbelieving lives. No, He's not finished with me yet either...

I guess some would think that if the Apostle Paul had been a better person, or had more faith, his thorn in the flesh would have been removed. For some reason, God gave him the grace he needed rather than healing. I agree that we find it difficult to deal with chronic illnesses.

By the way, Billy Stoll told me one time that I am the only person who ever got lost in Due West, SC. I was trying to find my way to the Whispering Pines Church and got lost in Due West. I drove all around the college campus trying to find my way out.

Continue to cling to your sister's words, Dorcas; she's right on. I am a teenager who continues to deal with chronic illness... I have learned that it is difficult, hard, and confusing. So many people have "wonderful" advice, but I've had to learn to simply find what works for me, regardless of what people think.Praying for you and Emily!

Been there, heard that!!God knows your heart, and isn't it just like Him to put such an angel of a grandmother to be your seatmate?!!Deut. 33:27 says, "The eternal God is thy refuge, and underneath are the everlasting arms.." Praying that He will comfort you and carry you through.

Ach Dorcas! These people who live with merely a stubbed toe to worry about in an entire lifetime are those people who are SO close to God....... Remember that He loves Emily way more than you, and He thinks good thoughts, not evil, towards her (and you!)And I love your made up word!!caringly, geneva

Saying a prayer for you. I've often pondered the whole "why do bad things happen to God's people"...and finally decided we will never fully understand in this life. It just often doesn't seem fair, or doesn't make sense. But one thing I have learned, no matter what kind of hardship from this sin cursed world we are faced with, God's presence is right there with us, comforting, holding us, lifting us up, and shaping us into a vessel that is precious in His sight.Teresa(chambray7)

years ago, when I was in college and dealing with the immenent death of my 8-year-old nephew (who had been battling leukemia since he was 2), a professor said to me that God was more concerned about the inside than the outside....He's more concerned about WHO we are, our character, then the externals.

We often don't understand why bad things happen; but we can be sure of this: God is able to bring good out of any evil situation, if we trust him and let him. Sometimes that good is in the strengthening of our faith, or developing patience.

Stick by your daughter....smile and thank people for their concern and then PROMPTLY put 95% of what you hear out of your mind and heart.....people mean well but after all....they are only human. LOL I too remember being intrigued by the toilet seat covers in O'Hare. LOL

Thanks for honestly sharing your frustration with all the (possibly) well-meaning armchair theologians out there. I, too, tired long ago of all the opinions (and the "God told me sos") as to why any particular events might have occurred at various times in my life. Through my own experience of frustration, hurt, and rage at the unfairness (and ignorance) of the judgments of others, I now respond very differently to people who honor me by telling me their stories of (ongoing, unfinished) pain and struggle. I listen. And then I just tell them the truth: how very sorry I am that they are experiencing this very hard time. I will so often be amazed and humbled at what they're going through, and I know I honestly can't comprehend their unique pain and struggle, as I often haven't been through that set of struggles myself yet.

And I don't assume anything about God's will (what arrogance to do so when only God knows our hearts!) And I don't tell them stupid things like "I know God has a reason" or "I know God will bring you through this terminal illness" or other much worse things. I simply sit and am truly sorry with them.

Perhaps part of why I have come to this particular place is that there have been so few people in my life who would simply "sit and be sorry" with me when I desperately needed that non-judgmental compassion that was okay with not knowing the platitudinous answers. It seems so very few Christians are okay with saying they don't know why God lets things happen, for instance. It's almost like they view the statement as sacriligious, somehow. For so many Christians an appropriate "moral" (preferably based on the Scriptures) has to be attached to all human suffering in order for it to fit neatly within their black-and-white and rather narrow framework.

But my personal experience with suffering has been that it defies labels and makes us far less certain of all the human judgments we routinely make (even if we firmly and zealously contend that these judgments are Scripturally-based and therefore completely accurate, even when there's obviously a lot of convenient proof-texting involved).

Point is, I'm so sorry that anyone has felt any need to offer unsolicited advice on the state of your daughter's health, or spiritual well-being, or lifestyle practices.

I pray for you and your family that God will continue to make his presence known to you in unexpected ways as you continue this difficult journey...a journey that seems to be without any of the typical landmarks that might help you to know your way. I pray for God to continue to send you people who will "sit and be sorry" with you...people who will not waste time or energy on foolish guesses but who will spend that time and energy instead lavishing love on you, your family, and particularly your daughter, and on interceding to their (and your) merciful God on your behalf.

I am truly sorry for what you are experiencing. May the peace of God be with all of you...

After reading this article, the comments made by others and remembering your speech at the BMA convention I got to thinking that perhaps, just perhaps, God is using this ongoing situation in your family to teach you a lesson - one that you may later share with an audience, of one or many...If you think I am a tad bit harsh, it might help you to know we saw our 25 YO daughter fight glioblastoma and lose. So, you see, the lessons one learns through all this kind of affliction are so profound that there is no other way to learn them. After all is said and done - and learned - you can say "Yes, LORD, you are so good and so wise!"Blessings,Sandra Miller

You know, I think people forget that we live in a sinful world, and many things are without explanation and illness is not necessarily a sign of sin on anyone's part. Blessings in fighting for Emily's health, and in your resolve to let her grow up dealing with her issues in her time!

About Me

Follower of Jesus. Wife of Paul(Mennonite minister, school principal, and grass-seed-warehouse operator). Mom of six. Columnist for Eugene Register-Guard. Author of Ordinary Days, Upstairs the Peasants are Revolting; Downstairs the Queen is Knitting, Tea and Trouble Brewing, and Footprints on the Ceiling.